12.29.2011

Can you identify each of the four different devices our kids are using?

Holidays are blowing the top of my head off. Not necessarily a bad thing, especially as the kids are having a great time and Leo specifically is in a good space. But oh the backlog -- posts on apps, cases, and yes devices in the works. If I can ever find two moments to rub together!

12.26.2011

"Loud Hands: Autistic People, Speaking features essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands)."

12.21.2011

One that can hopefully make a positive difference for people with autism of any age, and their families.

(One that I wish hadn't nearly killed Jen Myers during its production process -- she deserves to be waited on by angels and noble djinni for a few weeks, trust me).

One that I really, really wish I'd had when Leo was first diagnosed with autism, so I could leapfrog all the tangents and charlatans and bad advice and bad teachers and could start out at the beginning of this autism parenting learning curve strong, aware, and hopeful, instead of afraid, confused, and depressed.

One that -- in a move so surreal and wonderful as to near the unimaginable -- cool-as-hell investigative reporter Steve Silberman named his Book of the Year. Book of the Year.

It's rare to find folks from outside the autism communities who not only want to understand why a book like TPGA matters, but who are willing to use a sizable media megaphone to broadcast its message. Thank you, Steve, for caring so damn much and for doing the right thing.

12.15.2011

Hey locals! A local not-for-profit photographers' collective that commits a portion of their photographic profits to
helping underrepresented families capture, preserve, and share their
memories is having a free BBQ and holiday family photoshoot at Hoover Park, Redwood City this Saturday December 17 from 11-2pm. They are offering a free professional portrait session and framed ready-to-hang print.

They ask only that folks bring a food item or a $10 raffle item or gift card for the families in need. There will be a videographer on hand filmingthe promo, so please show your support!

Thai Chu from AliveByShooting.com leads the collective and is also a friend of Leo's; here are some wonderful portraits he's taken of Leo; these are the quality of portraits that will be available:

The photographer's collective also "collects and
distribute old digital cameras to families through a collaboration with
nonprofit agencies in developing nations. Currently, we are working with
Islas de Las Hermanas and Peace Corps on the island of Ometepe in
Nicaragua. This island of 30,000 is one of the poorest communities in
Nicaragua, and none of the families in the communities we work with own
cameras or have even seen themselves outside of a mirror. With our
digital exchange, when their memory cards are full, their prints are
developed in the US, shipped, and distributed free of charge. Please
donate your digital cameras, accessories, and bilingual manuals by
contacting [Thai]."

12.13.2011

Just came across this. Sigh. She seems like a reasonable, passionate sort -- but is totally invested in biomedical/DAN! autism chicanery. What advice would you have? How would you approach her?

My son has been back on gluten (wheat and related grains) for five days now. His behavior hasn't taken any noticeable nose dives, no sir. Quite the opposite. On Friday he went up to our friend Mary, and announced "Dat's Mary!" Everyone in the room was shocked and pleased. That same day his speech therapist told me he'd had his best session in weeks.

And (apologies, gentle readers) his bowel movements haven't been liquified, either. Those little logs are still rolling along. I am hopeful, oh so hopeful, that we can eventually phase in dairy, chocolate, citrus, peanuts, and sugar.

Now, does all this mean that the past nine months of special diets and vitamin supplements and dietary enzymes have been for naught? Hell no.

I firmly believe that autism arises from multiple causes: hard-wired genes, the environment (including lead poisoning), vaccines, and/or diet. But, as of today, there is no way to quickly pinpoint how a child became autistic. One of the only things a parent can do, can control, is dietary trial and error.

Hence the elimination diet. It was and remains complicated, but it is in no way harmful to him. Not a bit. As in, there was no harm in trying it, and now we may get to be fairly certain that diet is not a factor in his case.

In addition, his GI tract had been seriously messed up by round after round after round after round of antibiotics--the poor boy had non-stop squirts. Putting him on a bland diet has given his little innards the resting period they needed to rebuild themselves. They seem to be able to do their job just fine these days, although they are still getting a little assistance from probiotics (heartily endorsed by his mainstream pediatrician, BTW).

Many autism professionals, particularly those in the ABA field, are skeptical when it comes to elimination diets. Some are outright hostile, and will make concerted efforts to dissuade parents from trying dietary approaches. Fuck them. They're not the parents. They don't have to live with the child; they won't be there in ten years.

Again, there is no harm in trying an elimination diet, other than inconvenience on the parents' part (note that inconvenience does not equal impossibility). For some children, this diet makes an incredible difference. For others, not a whit. But wouldn't you rather know?

Ways to get started:

Read Karyn Seroussi's Unraveling the Mystery of Autism...
Novelized account of her son's recovery due to a special diet; a bit shrill, but compelling nonetheless.

Find Yourself a Good DAN Doctor
Ask for recommendations from current and former patients. Some of these practitioners should be canonized, but I have heard of others who are costly bumblers.

...

...

...

Well?

Now here's the thing. I wrote this post. Seven and a half years ago. One year after Leo's diagnosis. Because I was misguided. Because I listened to the wrong people (e.g., see list above). Because those people were the loudest voices in the autism parent community. Because good information wasn't available. Because a book like our new Thinking Person's Guide to Autism wasn't available.

But ... our book will be available, in just a few days. We hope it will make a difference to anyone new autism. We appreciate your patience, and hope you will help spread the word about our book, and why it's so important. Thank you.

12.07.2011

When I hear about yet another dangerously misinformed autism parent killing their child because of autism fears, I literally fall to my knees with grief. What kind of world do we live in, if people can't bear the thought of having a child like my bubbly, affectionate, exuberant Leo? In which fears about the challenges and expense of caring for an autistic child snowball into murder? In which people are so unaware of the vibrant diversity of Autistic adult experiences that they view the possibility of life-long dependence -- which may very well be my son's future, and which does not exclude a fulfilling, happy, and social life -- with soul-destroying horror? In which autism is declared the catalyst for a mentally ill mother's unforgivable act?

The answer is that we live in a world where autism negativity and fear mongering are rampant, and I blame the media. Squarely. The Internet overflows with positive, respectful autism examples and role models that in no way downplay the difficulties that can come with being Autistic, but acceptance and even pluck don't grab eyeballs the way that tragedy does. This needs to change. The stakes are too high; we need balance in media portrayals of the autism experience.

I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.

It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics.

Countering negative autism attitudes and the pervasive media influence that shapes them has been a driving force behind Thinking Person's Guide to Autism. Providing positive role modeling and information is one of the primary reasons our project exists. And, as successful as the website and Facebook communities are, this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week). I really, truly hope our book will make a difference.

Information is power. We need to use our own power -- our social media voices -- to get out better autism information, and influence the media towards balanced autism portrayals. I hope you'll help spread the word about TPGA, ASAN, and other adamant autism advocacy orgs. If you're on Twitter or Facebook, please take the time to make a public statement of Autism Pride or #AutismPride. Your message might make all the difference to a desperate autism-fearing parent like Stephanie Rochester.

Leo at age two, around the time of his provisional autism diagnosis, and 100% adorable.

12.06.2011

Two autism efforts worth your eyeballs (and one that I hope will open your wallet), with a caveat coda:

MyAutismTeam

We've needed an autism social network/Yelp! hybrid like MyAutismTeam (www.MyAutismTeam.com) for just about ever. So I'm pleased that it's finally here:

From the press release: MyHealthTeams today announced the launch of MyAutismTeam, its flagship social network for parents of children on the autism spectrum. MyAutismTeam is the first social network specifically for parents of children with autism, making it easy to connect with others who have had similar experiences. The network is a Facebook-meets-Yelp style place for parents to share recommendations of local providers, openly discuss issues, share tips, and gain access to local services that they may not have otherwise discovered on their own. Since the summer, the site has rapidly grown from 30 to over 12,500 members, underlying the growing need of parents seeking support and an easy way to find the team of providers that best meets the needs of their children.

I encourage you to explore the site, and then send the team feedback about your experience as well as what you'd like to see in the future.

Autism Science Foundation's Recipe4Hope

I admire the Autism Science Foundation's dedication to and streamlined effectivenes in "funding outstanding science," so I encourage you to participate in their December fundraising drive, Recipe4Hope:

It takes lots of snow, and some helping hands, to build a snowman. It also takes all of us, working together, to support the research needed to understand autism.Your donation to the Autism Science Foundation, combined with those from families around the world, will snowball into lasting hope for children, teens and adults with autism.

Every dollar you give to ASF’s Recipe4Hope campaign goes directly to fund pre- and post-doctoral autism research fellowships to encourage the brightest young scientists to devote their careers to autism research.

By donating you are fueling scientists’ discoveries into the causes and treatments of autism. You are giving parents and teachers new ways to change the lives of children, teens and adults with autism. Through a gift to ASF, together, we are mixing up a recipe for hope.

----

I think both of these efforts have the potential to benefit Autistics and their families. And I would also like to see each of these agencies include Autistics (plural) on their boards or in official advisory capacities. Autistics have autism insights and investments that even parents, partners, or family members couldn't possibly share, and the range of those autism experiences cannot be represented by a single Autistic individual.

These organizations have power and influence and the ability to shape future policy, attitudes, and opportunities for Autistics and their community -- and so could only benefit from heeding the self-advocate mantra "Nothing about us without us."

----

Disclosures: I have consulted with MyAutismTeam on two occasions, and have been the recipient of an IMFAR travel grant from the Autism Science Foundation.

Dr. William Schaffner, a renowned flu expert and Chairman of the Department of Preventive Medicine from Vanderbilt University School of Medicine and current president of the National Foundation for Infectious Diseases; and

Jennifer Lastinger, a mother of four who lost her young daughter to the flu and who as a results is now a founding member of Families Fighting Flu and a passionate advocate for flu vaccination.

Both Ms. Lastinger and Dr. Schaffner spoke at length -- Dr. Scaffner about the most current information and recommendations for flu vaccines, and Ms. Lastinger courageously shared the story of losing her perfectly healthy daughter to influenza. I will be reporting on that section of the call at BlogHer. But the call also featured a lengthy Q&A, in which I and several other participants were able to query Ms. Lastinger and Dr. Schaffner directly, and that is what follows -- absolutely critical reading for anyone concerned about keeping their children and themselves healthy.

A thread that ran through the Q&A was how to counter the harm caused by vaccine opponents and misinformation. Jennifer Lastinger's response was impassioned:

I get very frustrated with a lot of the arguments [against vaccination]. The bottom argument is, do you want your your children alive? YES!

I fully believe vaccination would have kept my daughter here with me, so that's as simple as I can get.

Here is the remainder of the Q&A:

Shannon Rosa: Who cannot receive the flu vaccine?

Dr. Shaffner: There are some people who cannot be vaccinated or who respond poorly to vaccines, but really the only group in which flu vaccines are medically contraindicated is those with a genuine allergy to eggs. But even that group has been narrowed down to only those who really cannot eat eggs at all. Beyond that, as we get older -- here's the paradox -- senior citizens are the ones who tend to get the most complications, but because their immune systems aren't as robust as they used to be, and they also tend to not respond to immunizations as well as younger people. So they clearly should be vaccinated -- but all of us who have contact with them should also be vaccinated.

And then of course there younger persons who for reasons of immunodeficiency or because they're taking immune-suppressing medication do not respond to the vaccines as strongly either -- and therefore everyone who has contact with them needs to get immunized for influenza, that important "cocoon" of protection.Trish Parnell from www.PKids.org: There were some recent official concerns regarding the intradermal flu vaccine injection, can you tell us what happened?

Dr. Schaffner: The FDA discovered that some pharmacies were using the intradermal "jet" injector with the regular flu vaccine -- and that combination is not licensed, it hasn't been tested. So in the interests of being overly cautious, they recommended that people get re-immunized. But after more thought they realized that re-immunization wasn't necessary.

Vincent Iannelli, Pediatrics.About.Com: In my area of Texas, half the pulmonologists say it's OK to use the FluMist [nasal spray] vaccine in kids with stable asthma, and the other half say it's not OK.

Dr. Schaffner: The FDA and the CDC recommend that it not be used in children with asthma because in rare occasions it can provoke a broncho-spastic response. I do know that very astute pediatric pulmonologists will use the FluMist vaccine in children whose conditions are very stable.

So then the question is, why would these doctors be more interested in using the FluMist version of the influenza vaccine in children? The answer is that for the A strains of influenza, the nasal spray provides more immunity than the injectable vaccines, and it's also a little bit broader, more likely to provide protection against those mutant variations of the flu. Though that's not a big issue so far this year.

Dr. Iannelli: We're also seeing some parents who are skeptical of the FluMist vaccine because they say it's a live virus vaccine -- though my kids all got FluMist because they don't like shots.

Dr. Schaffner: The pediatricians in our area are definitely moving to FluMist because it's quicker and easier to administer in a busy office practice, and also because the kids seem to like it better than the inoculation.

The live virus in FluMist is a live attenuated strain. So it's been tamed in the lab to be what's called "cold sensitive." What that means is that if we take the temperature of any of us at the back of our nasopharynx, it's a degree and a half cooler than it is in our lungs -- unsurprising as our nose and throat are exposed to air. The virus can only multiply at that cooler temperature; it cannot multiply in our lungs or cause any mischief there. It may cause, just for a day or two, a little bit of a scratchy throat, and in some people a little bit of nasal discharge. But that's it. It cannot cause influenza.

Ashley Shelby with the Moms Who Vax blog momswhovax.blogspot.com: I've been hearing from parents who have had nurses or physician's assistants wait until the pediatrician leaves the room, and then discourage them from getting the flu vaccine. Have you heard about this, are there safeguards in place, and what can parents do about it?

Dr. Schaffner: I'm not shocked, because within medical centers all around the country -- as we try to persuade everyone who works in such places to be vaccinated -- it paradoxically turns out that our nurses are the group most wary of immunization. Also the myth that you can get flu from the flu vaccine is most common among nurses. And their opinion is often extremely persuasive. So we're working hard not just to persuade them to get immunized but to become immunization advocates.

If you encounter nurses who have misinformation about vaccines, I would say to parents: be adamant! Insist on vaccination. If you have trouble, ask for the doctor.Lara Zibner, pediatric emergency specialist, Author of If Your Kid Eats This Book, Everything Will Still Be Okay, writer for Parenting Magazine: Are there currently any reimbursement issues with the flu vaccine?

Dr. Schaffner: There aren't any problems with insurance and flu vaccines in the U.S. When it comes to influenza vaccines, it's difficult to find a child who isn't covered either by their private insurance, or by Vaccines for Children, which provides no-cost immunizations for children whose families are not able to pay for them. Also pharmacies like Walgreens often have programs that offer free vaccines to people in underserved communities.Melody from Nurses Who Vaccinate (www.facebook.com/NursesWhoVaccinate): What is the best point in pregnancy for expectant mothers to receive the influenza vaccine, to allow for optimal results for both the mother and the unborn child, and create the most prolonged protection?

Dr. Schaffner: At any time during pregnancy. Initially when the AICP -- the Advisory Committee on Immunization Practices -- recommended second and third trimester only, but then a few years later along with their colleagues in ACOG, the American College of Obstetricians and Gynecologists, they reevaluated it and said that when you're pregnant and in the doctor's office is the time to do it.Natasha Burgert: Private Pediatrician in Kansas City, blogger at kckidsdoc.com: I have a very Internet-savvy patient population who keep bringing to my attention a recent Lancet article from late October with the claim that the influenza vaccine may not be as protective as we thought it was. That was not my interpretation after reading the paper myself, but I'm wondering if you're familiar with the paper and what your comments would be.

Dr. Schaffner: What they did in a very rigorous way is summarize what we already knew. The influenza vaccine has limitations. I like to say that it's a good vaccine, it's not a great vaccine -- in the sense that if the influenza virus changes, we haven't matched it up exactly. Also, there are individuals in our society who don't respond optimally to influenza vaccines. We need a new one, a better one. The lights are definitely on in the research labs at night as people are trying to provide a better vaccine. Some of the innovations -- the intradermal vaccine, the high-dose vaccine that's now available for people age 65 and older -- are products of that research, as is the nasal spray variant.

There are adjuvanted vaccines that are licensed in Europe but not the U.S., and there are many people working on the Holy Grail of vaccines -- the universal flu vaccine that would allow us to get our flu shots like we do our tetanus shots -- once every ten years. The director of the NIH hopes there will be one ready for testing in 2014.

Until that happens, we need to use our "good" vaccine to its best advantage. It will protect many people against illness, it will protect against complications of pneumonia and hospitalization, and it will protect against deaths. It can't protect against all of them, but protecting against some of those things is the current good, while we hope and wait for perfection down the road.Shannon (again): I keep up on anti-vaccine literature, and one myth I keep seeing is that of "virus shedding," of people who get vaccinated for the flu then infecting other people.

Dr. Schaffner: If you get any of the injectable vaccines, not only is it a killed vaccine but it is broken up into tiny little pieces and can't reassemble, so it can't become a new virus in your body and you can't shed it. The nasal spray vaccine is a live attenuated vaccine, but it just goes in your nose and the studies show that it is not spread to any people roundabout, so you don't have to worry about that either.

Christine Vara, Shot of Prevention: The universal influenza vaccination recommendations have been in effect for two years, what has the uptake been like?

Dr. Schaffner: We now have a universal recommendation that everyone who comes to a clinic, hospital, pharmacy; everyone should be vaccinated -- not just to keep themselves healthy, but so they don't transmit the virus to others. The more people we get vaccinated, the more likely it is that we will reduce transmission in and protect our communities.

Amy Pisani from Every Child by Two: We hear a lot about the safety of influenza and people questioning that because it's new every year. I wonder if you could talk a little bit about how the basic strain of the vaccine has already been tested and has such a long profile, and how they achieve such a quick turnaround time each year.

Dr. Schaffner: The influenza vaccine is the most used vaccine, it's given in the millions upon millions around the world every year; the CDC monitors its safety like a hawk. It's an extraordinarily safe vaccine. The FDA, although it licenses a new variant of the vaccine every year, has all the safety history of the basic construct of the vaccine in mind. This year in the U.S. we will give more than 120 million doses of the vaccine, the safey profile does not change -- it continues to be extraordinarily safe.

Amy Pisani: To clarify for a prior question: You said that some people don't respond optimally to the flu vacine. You're not talking about a reaction, but rather than they don't realize their body is not building up the antibodies, correct?

Dr. Schaffner: Correct. Some people's bodies are not capable of responding and creating those antibodies that will protect them against influenza. They're too frail, or they are immunodeficient, or they are taking immune suppressant medications that prevents their body from responding optimally, from creating the prevention that the vaccine is designed to produce.

And as lay people we use the word "flu" rather casually, a lot of people mistakenly think a bad cold is the flu. But when you get influenza, and you've had the vaccine, your illness will be milder, and you're less likely to have complications like pneumonia, hospitalization, or death.Christine Vara: Jen, could you elaborate on Emily's Law?

Jennifer Lastinger: My husband Joe was really passionate about getting the word out [about the real-world consequences of not getting vaccinated for vaccine-preventable disease], especially through schools -- we felt the schools were the key to getting kids vaccinated. We worked with a local senator who helped us pass the law a couple of years ago, and now school websites in Texas have to post information during flu season about the flu, how to prevent it, where to get shots, and how to keep your kids healthy.

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In case you are unfamiliar with how dramatically misinformed vaccine opponents are and why ongoing efforts to communicate helpful, correct vaccine information are so necessary, consider the excerpts from the Up Your Nose post by AoA's Cathy Jameson:

"...we were recently exposed to some kids who had received the Flumist [sic] vaccine. Hours and hours and hours of contact, play time, meal time and chit chat occurred before I found out those children opted to have the live flu virus jammed up their nostrils earlier in the day."

"…when people get live virus vaccinations but then don’t quarantine themselves while the live virus sheds, other people are at risk."

"...Three days later my five-year old came down with her flu-like symptoms. She was the third to get pummeled getting hit hard with the aches, chills and a very high fever. Coming home from school very distraught that day, she told me that a classmate of hers missed the morning portion of school to get his flu shot. In the throes of her high fever she burst into tears, “Mommy, why’d they go and do that?” My typical son listened to this sad story and announced through his horrible wheezing and coughing, “I wish the flu shot had never been invented.”"

11.30.2011

National Adoption Month is over in less than an hour. I'm mostly thinking "sayonara!"

I don't write much about the young man I gave up for adoption 21 years ago, because there's not much to write. His once-open Facebook page is practically shuttered. He has almost no Internet presence, which is downright odd in this era of social media as collegiate oxygen. These things make me suspect he's either:

Unaware that he's adopted and a techno-contrarian like his smart phone-rejecting biological mother, or

Very aware that he's adopted, possibly aware of me even -- but skeeved by my fitful biomom blogging and so staying offline and away from my Google-y clutches.

The first is not that unlikely. His blondie-blonde non-Mexican aunt was adopted into his dark-skinned dark-haired Mexican family and never told she came from elsewhere -- she was loved, they are a tightly knit extended family, that's not the way they do things, it didn't matter. The young man himself is a ginger, he is well-loved by and adores his family -- and as I've written before, I have no wish to disrupt that scenario, distasteful as non-disclosure of adoption might be to me personally.

And if it's the second? Sigh. I just ... am sad he's missing out on knowing us. All the signs say he'd like our family. He is a devotee of Star Trek: TNG and a slightly humorless geek like me, he is an intense history-loving academic like my eldest brother (the one info point I've been able to find lately is that he's Phi Beta Kappa), he has my mom's and second brother's flaming hair. I grew up with lots of cousins and adore them all, I married into a large Portuguese family and adore them all -- more family to love and to love a person back is only a good thing, in my book. But, he's not reaching out like most adopted people his age do, according to BlogHer, and that makes me think the connection is increasingly unlikely to happen.

At this point, all I really want to know is whether or not he knows he's adopted, but there's no way to find that out that's not creepy or potentially disruptive.

So I guess there's really only one thing left for me to do, and then I'll have done everything I can: Tell Mali she has an older half-brother, as I told Iz six years ago. I'm not looking forward to it. Mali is a really -- really -- different girl than her older sister, so I will definitely discuss it with Seymour and may even enlist a professional family counselor for advice before having That Talk. Iz is sweet and sensitive, but she's an intellectualizer, she understands the logic behind an unprepared young woman giving up a child for adoption. Mali, whip-smart as she is, is all heart -- she's only going to hear that she has a big brother whom she cannot and may not ever meet. It's going to require finesse, that chat.

As always, opinions and advice welcome. I'll leave you with the video I'd so like to share with him.

I recently came across three such apps: Go Go Kiddo, Alien Buddies, and Bugs and Buttons. These apps are chock-full of activities, not just dedicated to a single function (not that there's anything wrong with a dedicated app). Their design is professional, devoid of the "anyone with a good idea can do this" feel that characterized so many first-wave (though still useful) iPad apps. They're teaching your child stuff while said moppet is entertained (not that there's anything wrong with pure play). All three are meeting with resounding approval from both my just-eleven son with autism and his just-seven sister. And not a one costs more than $2.99.

Bonus question: What's really different about this picture?

Go Go Kiddo ($1.99) is a brand-new app from a team that has obviously invested much time observing the apps kids like to play, and using that information to create "Vitamin Fortified Fun." They did a great job; in fact I think every one of Go Go Kiddo's activities could be a stand alone app.

Go Go Kiddo main screen

I was initially worried about Go Go Kiddo having a complicated main interface graphic, but I needn't have fretted. Each activity's icon has a representative graphic, and Leo is both a visual guy and an explorer, so once he learned which picture went with which icon, he was set. And Leo is a doer -- he wants to jump into the fun right away -- so even though I appreciated the demo mode that opens each activity, Leo appreciated being able to turn off the activity demos with a tap.

Leo's favorite activity is Letter Launch, which combines iWriteWords-like letter tracing practice with Angry Birds-style-enabled spelling. First you trace the a letter:

Then you use that letter's character to "pop" the bubbles confining the other letters needed to spell a word. Those familiar with similar launch games will be unsurprised that my kids find this game addictive.

Leo is always, always going to be happy with a music activity like Go Go Kiddo's Creative Keys. Always. He's going to be extra-happy with a keyboard activity that uses several different sound functions (piano, violin, silly sounds, animal sounds), a teaching mode, and a recording option that sets the Go Go Kiddo characters dancing to his original compositions.

The Creative Keys primary mode

Another favorite Go Go Kiddo activity is Trace and Race, which helps learn to write, identify, and differentiate between numbers. And helped distract and soothe our boy when he was trapped in a restaurant booth at Disneyland while giant furry creatures roamed the place, seeking victims to hug. Leo was wily; he avoided eye contact and was not accosted once.

Leo playing Trace & Race during an overwhelming breakfast
at Disneyland's Storytellers Cafe.

Alien Buddies ($1.99) is a good silly fun app released just today! Its primary activity choice screen is uncluttered, which Leo found helpful:

But each activity has many, many intra-activity choices and variations with both visual and written cues -- and then reading or listening options for each of those. Again, easy for Leo to navigate. Here is the Matching options screen:

You can match the Aliens' belly cards to the item on the pod in the visual version, and the belly cards to the pod's spoken word in the Listening version. So far Leo has stuck to the visual version, but I'm anxious to test him on the Listening version as matching has always been one of his strengths.

The Dot to Dot activity is cleanly designed, as you can see -- and Leo likes a solid, easy-to-follow dot to dot activity. He is less a fan of the open-ended sticker activity, but that is where his little sister goes overboard. No activities go wasted in this house.

Bugs and Buttons ($2.99) deserves kudos for its variety and flexibility, and the thoughtfulness of every aspect of its design. This app has eighteen activities, and a Stamp Collection option. The Bugs in the word 'Bugs' below? They're interactive (that's what Leo is playing with in the top photo above). And the only app company I've known to take such care with its background music -- which in B&B's case ranges from classical to Klezmer -- is TocaBoca.

The one irksome feature is the initial interface (below) -- one has to be literate to access it properly, because there's no visual cue as to which word leads where. Not helpful for wee kids or pre-literate folk. But that's a small quibble, and it didn't take very visual Leo long to figure out that the "ex ---" word leads to three full pages of activities options.

One of the three screens of activity choices. All the activities are lots, lots, lots of fun; every one we've tried so far has been appropriate for Leo:

Button sorting: Matching. YEAH! This starts out easy and facilitated (see hand icon below) and gets harder with mastery - more buttons, more matching, more mastery opportunities. Leo's awesome at this activity, as you probably guessed.

A similar, but not purely visual and so slightly more challenging (and IMHO so much more beautiful) Bugs and Buttons activity is Firefly Sky, which lets deprived West Coast kids like Leo who have never actually experienced fireflies play with them, and collect those that match the color word on the jar (so far the words have been congruent with respect to color, though it would be interesting to see how Leo would react if that wasn't the case, as he can read most color words).

This app has so many options, I know Leo will be exploring it for a good long while -- which I'm glad about, as he tends to get into ruts with the apps he likes and play them over and over again. But when he finds a new app, a good app, a useful app and an app with so many exploration opportunities, he's got a mission, he's got something to do. And while I keep tabs on him to make sure he's using the app correctly and making the most of its options, with Bugs and Buttons -- heck, with all three of these apps -- I know he's going to be busy, engaged, and entertained for a good, happy long while.

----*Disclosure: I was sent pre-release copies of Go Go Kiddo and Alien Buddies. I purchased Bugs and Buttons. But, as always, I only write about (and add to our apps spreadsheet) apps that impress me. All prices listed are accurate as of this post's timestamp.

11.28.2011

Look, I grew up in Anaheim. Disneyland's fireworks exploded over our house every summer night, and I played Dopey the Dwarf in the Main Street Electrical Parade. I couldn't be more blasé about the house of Mouse, so if you told me that my former workplace would one day make me happy enough to cry, I'd have scoffed. But crying with happiness is exactly what happened during my autistic son Leo's birthday trip to Disneyland -- he had two full days of pure joy that melted my cold, hard, meh-filled heart. For my son, it really was a Magic Kingdom.

The reaction has been very positive so, far, which I appreciate -- and I'm glad that folks are taking the same approach to the article I'm trying to, which is to focus on all the goodness that happened and not on the ten minutes of ohmygodwelostLeoF***F***F*** sheer terror. Good opportunity for Mali to learn about appropriate timing for extreme cursing, I suppose. Though Disneyland is ON the lost kids detail, let me assure you. If you're going to lose a kid who is unlikely to tell a stranger his name, that is the place to do it.

Some photos of the extreme fun, different photos than the Disneyland ones:

How that extreme fun happened: Our Guest Assistance card that allowed us to bypass most lines. Seriously, folks - if you or your child can't tolerate lines, this pass is invaluable. (The Disneyland folks recommend bringing a doctor's note, btw.):

Another thing to not go without: another adult. So grateful to my mom (and my little brother, the second day) for coming along, as Seymour and Iz stayed home for a soccer tournament:

Splash Mountain! Mali was completely, 100% terrified and screaming the entire ride, then declared it her favorite ride ever the next morning:

Spinning rides: Nirvana for our sensory seeker! This is the Ladybug ride in California Adventure:

11.26.2011

Happiest of seventh birthdays to our little firecracker. We are going to do our best to make the world ready for you while teaching you the art of selective compromise -- because it would be a tragedy if you let anyone convince you that your original, exuberant, creative, occasionally frighteningly cunning fabulousness is anything other than intrinsic and so very much the right way to be.

(The forgery, fondness for recruiting minions, and other black-hat path tendencies, though, we'll be watching and carefully redirecting those.)

But for today, enjoy the lobster dinner and chocolate cake you requested, along with our eternal love. You are simply wonderful.

11.25.2011

The good folks at Motorola sent me a Xoom tablet to give away. No hidden agenda, no stipulations -- they had simply heard how tablet computers can help people with autism, and they wanted to get two of their devices to people in the autism communities -- one to Leo, and one to a blog reader. A blog reader who could be you! Which would be an excellent way to start out the holiday season, eh? It certainly was for us (the Xoom, it is hella cool and Leo loves it, too).

The giveaway is happening on Thinking Person's Guide to Autism, starting now, and ends on Saturday 11/26 at 11:59 PM. If you live in North America and would like a chance to win a very cool tablet device, head on over.

11.22.2011

Leo loved loved loved Disneyland. Loved. Like nothing I've ever seen him love before. So happy for him. Pictures, video, and full explanation/details coming. But. OMG. I couldn't have imagined this trip working out as well as it did.

11.16.2011

We're off to see the mouse tomorrow morning. Me, Mali, and Leo; for both of their birthdays. We're doing this instead of parties. Because I'm too tired to organize parties, and this is an very acceptable tradeoff to them -- or definitely for Mali and I hope for Leo.

It's been seven years since Leo visited his mother's homeland, the place where I used to drive the Electrical Parade's mine cart as Dopey the Dwarf. This is Leo on that last visit, in 2004, mesmerized by the Playhouse Disney show featuring Bear in the Big Blue House. (And 100% being his dad's mini-me.)

I've had a lot of good advice about taking kids with autism to Disneyland, about making sure we get that guest pass at City Hall. We're also staying onsite at the Grand Californian so we can retreat at any time, should Leo want to. (My mom is generously accompanying us so that Mali and her cousin Christy can stay in the park, should that happen.) And of course we have a Stories2Learn iPad social story about our trip.

But -- if you've been, and you've had a successful trip or just learned some interesting lessons about the Magic Kingdom, can you share your story? Not just for us, but also because I'll be writing up a post on this trip for BlogHer? I'd really appreciate some insights on what to expect, realistically. Thanks!

11.15.2011

One of the most painful parts of any kind of advocacy work, for me, is having to call out a person who just doesn't get it (just doesn't get it yet, one would hope). It's even harder when that person is a beloved community member. But ... that doesn't mean they can't stumble, and badly. That happened yesterday when Rob Gorski of Lost and Tired published his autism opinion piece Autism is NOT one size fits all, in which he attempted to call for community but actually ended up reinforcing some fairly harmful stereotypes about people with autism, as well as divisions between autism and Asperger's. Which Emily Willingham called him on, and rightfully so.

Thing is, it's completely fair to say that my son's experience as a non-conversational person with intense autism is not the same as those of Aspergians like Alex Plank or Rudy Simone. We should absolutely be true to our own experiences, and to that end I implore you to read Kyra Anderson's brilliant meditation on autism parenting and autism diversity and inclusivity and open dialogue, Bring Everyone Out.

But it is rarely helpful to make those differences dividing lines or points of contention, because focusing on them obscures a critical commonality: every last person with autism or Asperger's -- no matter their node on the spectrum, no matter how "high functioning" you perceive them as being or whether you think they can "pass" -- has that diagnosis because of intense challenges in at least one area, usually more. I recommend reading Steve Silberman's recently published interview with Ari Ne'eman, specifically the passage:

"Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment. Despite the good intentions behind the remark, I felt a profound sense of hate and disgust motivating it — not of me as an individual, but of the person I was growing up, and of the person I still am, hidden underneath layers of mannerisms and coping strategies and other social sleights of hand. Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are."

Autism and Asperger's are the same universe. Anyone who thinks differently has not spent enough time participating in the wider autism community.

The real issue is that Rob is seen by many as a role model for autism parenting -- and if his opinion has influence, and that opinion is actually damaging to autism communities rather than constructive, then we can't stand by and excuse him because of the separate issue of his personal life being so stressful. That's the hard truth of real advocacy, and it sucks.

I don't envy Emily for the blowback she's received for being willing to call Rob out -- his readers are very protective of him, which is understandable. Their emotional investment, and the fact that even deserved criticism can feel like an attack, makes it hard to accept the fact that his opinion piece, though heartfelt, was badly misguided.

11.14.2011

Here's what I re-learned this weekend: Head wounds bleed a lot. I just wish Leo wasn't the reason for the field medicine refresher, even though his bonk ended up being too minor for stitches, and even though he has been fine ever since.

Our boy was engaging in a bit of pre-bedtime wild rumpus, and tripped and hit his head just behind the hairline, on a brass door hinge. It was an instant gusher, so much so that between the blood and the curls we couldn't see how big the cut itself actually was. Seymour had a dishtowel on Leo's noggin in an instant, which Leo unfortunately found even more distressing than the injury itself. As we then needed both a driver and a staunching assistant, the entire family abandoned our chicken dinner and rushed out the door to the hospital.

The ER visit was routine and uneventful. ER staff tends towards dry humor (my mom was an ER nurse for almost 30 years), so it was not surprising when the front desk greeting our blood-drenched boy with a matter-of-fact "Well, that doesn't look good," and marched him off to Triage. After that, Leo was mostly happy to watch videos on his iDevice, and get hugs and kisses when he remembered that he was injured and in a hospital. After a while, he even crawled onto a bed and asked for a blanket (it was his bed time, after all).

Once the medics were able to wash the blood out of Leo's hair and see the wound itself, it turned out to be a lentil-sized divot. No need for interventions besides a dollop of Polysporin. The attending doctor managed not to roll his eyes, but was obviously unimpressed -- sending us out the door with a reminder to keep it clean and that, yes, head wounds sure do bleed a lot.

Seymour and the girls mostly stayed in the waiting room while Leo and I were in the exam room. Apparently a local Sheriff was waiting as well, which gave Mali the opportunity to whip out her best Dale Carnegie routine:

Sheriff: "Well, I'm waiting for my friend Charlie to get fixed up from a car accident..."

Mali: ...told the sheriff about Leo and his bonk, chattering until until the sheriff edged away.

In her defense, Seymour says it was a very big and very shiny gun. Plus this is a girl who heckled Demetri Martin in front of 2000 Radiolab fans -- social confidence is not an issue. Social finesse, that is something else (and this is the moment at which I implore you to check out today's TPGA interview with Flummox and Friends creator Christa Dahlstrom and support social smarts programming for quirky kids like all three of mine!).

We went home. I soaked Leo's shirt in cold water (see above), which meant the blood washed out easily and his favorite shirt survived the incident as easily as its owner. We scrubbed those kids that needed scrubbing assistance and tossed them into bed and gave thanks for the conveniences of our life -- like insurance and ER proximity -- that made the whole incident so much less stressful than it could have been.

Leo was fine the next morning, except for occasionally asking for more kisses on the bonk spot. We spent the morning at the Palo Alto Junior Museum and Zoo's Super Family Sunday, an annual event during which they open the facility just for families of people with special needs. What a soothing, happy, stress-free event -- can't imagine a better way to follow up the previous evening's excitement (and I love to see museums and zoos and other orgs do this for our community).

11.07.2011

Iz wants a cell phone. Desperately. Her lobbying reached a fever pitch one year ago, and irked even her usually unflappable dad. So we struck a deal: She both stops perseverating on the topic and hits a certain grade plateau for three trimesters in a row, she gets a phone.

She stopped the daily campaigning. She also hit the marks easily for the first two grade cycles. But this Friday, when the third cycle's grades came in, she missed the bar in one class: her hardest, the one she likes the most. By .58%.

She earned a 89.42 B+.

She's not getting the phone.

Because that's the way the world works. Sometimes you fail, despite putting in your all and doing your best. And, you can't argue with math. It's a lesson kids needs to learn, in a way that really sticks. When they're young. Before they get to high school, college, the work force -- before they start believing they can negotiate anything, before they start dealing with people who are not their parents.

This lesson is sticking.

I completely empathize with Iz wanting a phone -- most of her friends have them, and they text each other all the time. She's out of some social loops, and that sucks. But I also see some of her friends treat their expensive devices casually, losing or breaking them without much concern. And Iz is like her mom -- she spends much of her life in her head, untethered to the material world, which means we both misplace important stuff due to inattention. She needs to understand that having a phone is a huge responsibility, a big cash-intensive deal, and one that requires constant locational awareness. These points can't be emphasized strongly enough.

And she will get a phone on her thirteenth birthday, which is in two months. That's been a given since she was wee, since she first started making noises about apps and texting. I think a phone is a good idea, given that she'll be in high school next year, and her activities and independence will only ramp up.

But two months is an eon, from her perspective. She's really bummed. I don't blame her, and told her so.

She handled the missed mark with good grace, though she was initially extremely upset -- she did work her ass off, after all. She also said that she'd rather get a B+ in that class -- which in her opinion is taught by the more invested teacher -- than be in the less challenging class and not learn as much and get an easy A. Her eyes are on learning and mastery, not primarily on the grades -- though she understands that they're important, too. And she did get a consolation prize for the hard work that resulted in such good marks: The first season of a trashy teen soap opera on iTunes.

It's important that our kids to learn how to fail. In that way -- and even though I would never intentionally cause my sweet, thoughtful, hardworking girl distress -- I'm almost glad she didn't get that final A. Better she learns this lesson from someone who loves her unconditionally.

11.04.2011

Leo is a chubby boy. There's no pussy-footing around that. Whereas his pediatrician once had a "let's wait and see" attitude towards Leo's health and girth, she has started to remind us that now is the time to instill life-long healthy habits in our boy, if we can -- understanding of course that Leo's autism comes with food issues, and that the appetite-whetting medication he takes to help him control aggression is a complicating factor. And I know that Leo is not alone in needing to find strategies to be a healthier kid.

So it was with great interest that I joined yesterday's conference call with Ability Path, Special Olympics, and Best Buddies on their just-released report: Finding Balance: Obesity and Children with Special Needs [PDF]. I was relieved to discover that the participants mostly focused on practical, healthy support and strategies for families and individuals with special needs, rather than stigmatizing obesity itself.

The following are my notes from the conference call, any errors or omissions are also mine.

AbilityPath.org launches national campaign to raise awareness, end obesity epidemic, publishes guide for parents and caregivers in coalition with Special Olympics and Best Buddies International

Ability Path's Gabrielle Karampelis moderated the call, and stated that the report is meant to ignite conversation.

Sheryl Young, CEO of AbilityPath:

Children with special needs and disabilities have been left out of the national conversation about the obesity epidemic. We need to include them -- and we need to talk about the role that family members play, or physicians treating and advising family, or the school responsible for physical education and inclusive programs, or city council members approving inclusive equipment at playgrounds or at the park. They all need to be part of this conversation, for the following reasons:

Thirteen percent of American families have a child with special needs or disabilities.

It's really impossible to overstate the extent of the problem, we don't have enough information -- but in general this population is 38% more likely to be obese, and in some specific populations the numbers are more critical -- in the Down syndrome population the rate is 86%.

The issue is seriously complex, but we're hoping to education the general public about this -- and also convey a sense of hope. We want to raise awareness and have a call to action.

Tim Shriver, Chairman, Special Olympics:

For us, this report is bad news. We have over 3 million participants in community and fitness programs. We all deserve a failing grade in the ways in which we've created communities of health, fitness, and inclusion. I think the crisis is seen most closely in social aspects, but also in health aspects and discomfort aspects. There is a sense of apathy about creating a difference, and with our community commitments.

The Special Olympics is committed to redoubling their efforts, and accepting that this report is an indictment of our efforts. We need to include kids, need to "play unified" so everyone get the chance to be healthy, learn sports and nutrition. Our coaches will be trained in year-round fitness and nutrition, not just shooting baskets and running the 100 yard dash.

This is beyond a warning. This is a statement of serious problems. Our commitment:

First and foremost to expand our work

Second that when kids join Special Olympics, kids become not just more fit, but committed to health and fitness and nutrition

I'm so glad to be part of the release of this report, Lauren has struggled with this issue daily for her whole life, and I have supported her.

The report is full of real and practical solutions that we can really use to help our kids. It's so important that when people talk about obesity issues, they include our kids. (Robin wants to help any advice she can as we move forward.)

With Lauren as with many other kids with special needs, the relationship with food is always more complex than with typical peers -- especially in terms of balancing healthy choices and independent food choices. Now that Lauren is a young adult, any suggestion can be seen as treating her like a child. This is especially hard now that Lauren spends so much time on the Glee set with overabundant food choices.

70% of young adults feel parents are intruding when they offer solutions. But Robin thinks this report offers hope and health. When she read the report, she felt like it was the story of her and Lauren's life.

Questions from callers

Shannon Rosa, Thinking Person's Guide to Autism: When our kids are on medications that increase their appetites or lead to sedation, how can we balance those side effects with their health?

Cheryl: The question has come up the most: When we announced the report, we had streams of comments on our Facebook page (www.facebook.com/abilitypath) about this issue.
When the meds work, and you need them to work, then talk with physicians, hopefuly they'll have better info, and will be able to suggest other things you can do. You'll probably have to make lifestyle changes, like walking every day. Every family has to look at what works for them, and get more success stories that we can share.

Tim Shriver: We have a generation of medical professionals that are really seeing kids with special needs into adulthood, they are treating major conditions and seeing nutrition and healthy lifestyle as a lesser priority. In the meantime, the advocacy lies with parents and self-advocates themselves to challenge their physicians to help them understand how medications can contribute to unhealthy lifestyles. We need to come up with new models that prioritize healthy lifestyles.

Gabrielle: This report is meant to spark conversations, encourage families to put health at the forefront of their medical concerns:

Reporter for La Opinion: Does economic status contribute to the likelihood of negative health outcomes?

Tim Shriver: Resounding yes. Poverty contributes to negative health outcomes, and special needs can contribute to poverty. People living in poverty are more likely to be obese, and have significant health problems -- and find it difficult to get health care. This is true not just in the United States but in developing countries all over the world -- Latin America, Africa, Asia. This is a situation where poverty contributes to injustice -- when injustice is defined as "unfair treatment."

La Opinion: Why do special needs contribute to being overweight?

Robin Sinkhorn: That speaks to the complexity of this issues -- you're dealing with kids across the special needs spectrum, regardless of income -- they're not as active, they might have food issues, food aversions, food cravings because of medication.

Liz Doughty, San Bernadino: I have a 26 year old granddaughter with seizures -- she gets very upset when she feels caregivers are impinging on her independence, but she doesn't always make the right decision. What advice do you have?

Robin: It's very important to set up your child's expectations, and let them be the person to make the healthy choices. Lauren just got an iPhone app that can help her track calorie counts. That might backfire in terms of being overly concerned about calorie counts for some people, but it's one little thing that has worked for us.

Cheryl: It also helps to hear from doctors that health will impact lifestyle, as opposed to hearing it from parents or caregivers.

One of our clients has incorporated walking into her daily routine whenever she can, has lost 20 lbs and has a goal to lose another 20. She also now fixes her own lunch at home. At AbilityPath.org, we are compiling a list of websites and apps to help people track their own meals and health, and create menu plans and goals. They are also starting up peer support groups so folks can help support each other. It's promising.

Laura Cork, from parenting blog LAStory: What are some solutions to help other kids understand that our kids can be strong, and how to include them?

Cheryl: The Special Olympics and Best Buddies just partnered up with Nickelodeon's "How I Play," national day of play -- a great success. Steve Wampler, who has cerebral palsy, recently climbed El Capitan, and does inclusive camps -- he's really dedicated to showing how our kids can exceed expectations.

Tim: Exercise, sports, and play is what our kids like! They enjoy setting up games and playing sports, swimming. The best way to promote a healthy lifestyle is to make it motivating and fun! Include incentives that are enjoyable. Let's get kids playing together!

We organize unified sports -- but we also see self-organzing happening in middle school, high school, assemblies, outings, campaigns -- so why not with sports and play? Let's make it easy and important rather than peripheral! It shouldn't be marginalized, completely overshadowed by medication or homework. It is critical to expand accessible and inclusive sports and play for people with speical needs of ALL ages.

11.03.2011

Yesterday the entire TPGA editorial team -- me, Jen Myers, Liz Ditz, Emily Willingham, and Carol Greenburg -- was interviewed by Elise Ronan on Special Needs Talk Radio. It made me incredibly proud to be part of such a smart team of ass-kicking women.

We talked about the forthcoming TPGA book, why it is so important for both our team and our project to represent an autism cross-section -- parents, Autistics, and professionals; what we hope to accomplish; the fact that the only investment in this all-volunteer project is our own blood, sweat, and tears (and, OK, occasionally the blood of non-critical-thinkers); and that we created this project to be a one-stop resource for families and individuals new to autism, to help them fast-forward pass the negativity and misinformation from organizations that may appear legitimate to new autism parents and the newly-diagnosed. And oh, a lot more.

A correction: rather horrifyingly, and in my nervousness, I bungled the name of ASAN -- the Autistic Self-Advocacy Network, www.autisticadvocacy.org -- and want the org referred to made absolutely clear. I cited ASAN in highlighting their new project for helping people with autism navigate college -- appropriately enough called www.NavigatingCollege.org. Please check out the new site and broadcast it widely!

TPGA is participating with gusto: Carol Greenburg is tweeting fabulously via @thinkingautism as -CG, saying things about being autistic and parenting a child with autism that you absolutely need to read, and Liz Ditz is doing her usual fantastic post curation as -LD on @thinkingautism and also at our site, ThinkingAutismGuide.com.

Leo's not much for opining verbally -- but I want you to know that he's here, he's not a boy who lets people ignore him, and I'm proud of him every time he does speak out and tell people what he wants.

Every time we break this stylus out in public, folks first get perky over using a brush on an iPad, then ooh and aah when they actually use it -- it's fun and, well, soothing. Especially when used with a really excellent product like the spare, elegant ink brush drawing/painting/writing app Zen Brush.

Leo enjoys goofing around with his Nomad Brush in Zen Brush (above), and the combo makes practicing writing a little bit easier. He can practice his stylus/pen/pencil grip without having to hold a piece of paper in position, and while the stylus glides freely over the iPad's glass surface without any literal drag (video below).

The Zen Brush interface is simple: three ink colors (black, gray, light gray), two eraser colors (white, gray), and a slider for brush size. I've yet to come across a person who didn't get a kick out of using the Nomad Brush/Zen Brush combo -- and I've brought them to several iPad workshops and conferences. Plus, all drawings in Zen Brush look good!

My "is this thing on" experiment

Leo copying me writing "bread"

My eldest's Sugar Glider.
She's a bit obsessed with exotic pets.

Mali's Twin Houses. The girl does have
a keen sense of balance and composition.

LOVE character calligraphy, by an iPad workshop attendee

Self-portrait by Steve Silberman. Love it!

One caveat for each item:

The Nomad Brush Mini is tiny. Very tiny. If I don't track it and put it back exactly where it belongs, it vanishes (and in fact I'm in a bit of a panic as I type these words).

Zen Brush has positioned their no-undo, page-clearing trash can icon in the lower right hand corner of the screen. This northpaw has accidentally tapped & deleted several masterpieces.

Other than that, have fun.

----

Disclosure: I was given our Nomad Brush by a company rep, with no strings attached -- we really do like it that much. I purchased all cited apps.